Thursday, June 20, 2013

Flashback #8 - Life goes on...

As I talked about in the last flashback post, David started his first round of chemotherapy the first week of December. Days 3-6 or 7 of the cycle were the worst as far as nausea really wasn't as bad as all the horror stories that you normally hear. Temodar is widely prescribed for brain cancer because of its effectiveness plus the lack of severe side effects. Typically there is no hair loss, which is cool, constipation is very common, as is fatigue and nausea...white blood counts need to be monitored, but not guaranteed to lower. David would get weekly blood tests to make sure his counts stayed at a good level. He was supposed to take colace, a stool softener, to help with well as miralax as needed. Overall, the Temodar was was no picnic, he still had days that he felt awful, but it was bearable. It does have a cumulative effect, so by the end of the year of chemo, he felt a lot worse...but at the beginning it was much easier than expected. 

I know I've mentioned it before, but David has always been a bit of a hermit. He's perfectly happy to not leave the house for days. I didn't know how bad he was when we first he's definitely gotten worse the older he gets. I'm so the opposite...I start to get antsy if I don't leave the house at least once a day. Guess the whole opposites attract is a saying for a reason, huh? :) Anyways, one of the side effects of brain surgery/cancer seemed to be a change in this. David started wanting to get out, hang out with friends as often as possible, go places...I loved it!!! He's slipped back into his old ways now, but I sure enjoyed it while it! Anyways, my brother is in the Army and we don't get to see his family that often. They were stationed in VA that year though, and we figured, hey, at least it's the same coast, let's go visit them! (They were near Seattle before this) We packed up the kids and drove the eleven hours to see them for a long weekend. We had a great time, and of course the girls loved visiting their cousins. My nephew Alex loved having another boy in the family...he just loved Buddy! 
  • not in Yankeeland anymore! just passed a sign for "Stonewall Jackson Shrine" LOL, awesome!

Red One had her birthday, turned 9. We had a nice, quiet Christmas with David's family. We received lots and lots and lots of snow. That year was the most snow since we had moved to New was awful! lol...actually got up on my roof and shoveled a bit off. It took hours to shovel the sidewalks...then it all froze so the kids could actually run on top of the snow. That was pretty cool. 

Birthday bike

  • well, after almost 4 hours of slogging, I have a tiny shovel-wide path that goes almost all the way around the house. One of my neighbors tried to come over and snow blow, but his blower died on my driveway :( But another neighbor is gonna come over in a bit and finish up and widen my paths. So thankful! and so very very tired and totally counts for like 5 days of pilates!
I had chopped my hair pretty short then...I always do that. I get bored so I color or cut it all the time! I thought David and I would match for a bit at this point ;)

Message I found scrawled on my car sweet Caelyn admitted to penning the missive. I asked her where on earth she got it from and she said "scooby doo!" hahahaha

Just to backtrack a bit...I want to talk about some of the changes in our lives brought about by David's diagnosis. We were both raised in Christian households, although very parents were charismatic Catholics and he's basically a calvinist was a part of our lives for a long time. However...that being said, it's really easy to just drift along and not invest a lot of time in that relationship. What with kids, work, moving a few times, we had gotten a bit disconnected from church and from God. I attended the local parish, but since David is not Catholic he never got much out of going. I had offered for years to go find a church with him and go to both, but he didn't want to confuse the kids. I did get some spiritual support from my MOPS group, but still...we were definitely not putting a lot of effort into our faith at that point. Nothing like a major flat on your back moment to change all that! This is an excerpt from my testimony that I shared with my MOPS group last year, talking about David's diagnosis.

"However, as unbelievable as it sounds, it’s also one of the best things that happened in our lives, at least as far as side effects go. Of course we wish it hadn't happened! But, at times like these you really figure out what is most important. It was a complete wake up call for both of us and we don’t take God’s goodness for granted anymore. Our faith has been completely revitalized and is stronger now than it ever has been. Without the complete grace of God there is no way we could handle this burden. He is there beside us at the Drs office giving us wisdom and discernment, there when fear returns, there in the times of discouragement…shining His holy light into darkness. He’s there in the friends that he has blessed us with, who prayed with us, cried with us, listen to us, cooked for us, and who still laughed with us. For there is still joy! His mighty hand is upon us and sustains us and we are happy and thankful to be so blessed. Do I still have moments where worldly wisdom hits me and I lose it? Yes, absolutely. But I have wonderful shining moments of the knowledge of His love for me, that He never abandons me, that He is the great healer and lover of my soul."

This is not to say that I haven't had my share of "Why me God?" moments...far from it!!! There are moments, hours, days that truly suck and you can't help but feel depressed. This is no bury your head in the sand mentality. But underneath it all, I have a peace and joy that could only come from trusting in my LORD. 

We knew that it was super important to find a church that we could all attend together. We tried out the church where my MOPS group meets, and while it's a wonderful church...I love all the people there, it wasn't quite what David was looking for. He grew up in Pentecostal churches, so we kept looking. His dad was going to a church near where they we went. It was the weirdest thing. The preacher seemed very charismatic etc while he was preaching, but when David went to talk to him and ask for prayer, he did not respond in any sort of normal way. He didn't pray for him there, acted like he wanted to get away. It was so odd and not normal for a preacher. We really felt like it's because that wasn't the church for us. Then David and Dad went to a Wed night service at Church of the Living God. They really liked it. We all went on was almost too Pentecostal for had been so long since I'd been to any church that really had all the clapping, hand raising, flag felt foreign! But the worship was wonderful and the preaching was amazing. Best of all, the pastor was so wonderful and prayed for David immediately. Not only that, the first few services after we started attending was all on healing. It was definitely providential! We joined a small group and made some friends. It's not perfect by any means, but there's no such thing, IMO. It's been such a place of encouragement and support...I'm very grateful to the community there! 

We started to settle into a routine. David was back at work, kids were in school. He was on the 28 day chemo cycles, church on Sunday and Wednesday...things were pretty uneventful at this point. One day I got a call from someone I didn't know. She told me she was a photographer and that someone had nominated me to receive a free photo session with her. My friend Darcy had entered me in her was so sweet! 
  • Congratulations Mary Catherine for being the winner of "The Joy Of Giving"! I truly can't wait to meet you and your wonderful family! I will call you today!
We decided since it was still winter and snow everywhere, we'd wait till the spring for our family portrait. It was something to look forward to.

I can't remember exactly why, but David had to get a stress test done...oh that's right, he'd had some chest pain in the past and they wanted him to get it checked out.
  • Had a stress test today. The good news is I have a good heart. The bad is it showed how out of shape I am. I even have a treadmill. Makes it all the more worse.
Totally normal...wouldn't it just be ridiculous to have more issues to take care of???

David was a total germophobe at this point too...with good reason I suppose ;) Lysol and hand sanitizer everywhere! Our dishwasher isn't the greatest...sometimes the cups come out with tiny pieces of debris stuck to them. He'd inspect each dish so carefully before using one. Heaven forbid if it had a spot or anything on them! So imagine if you can how he felt after this happened! :P
  • so, I have some awesome news!!! (not!) my girls picked up head lice from school, I have never had to deal with this, so new territory for me...just wanted to give fair warning to any of their friends, check your heads! lol...laundry and vacuuming here we come!
I'd never even seen lice gross!!! I don't know how they caught it...who knows. He was freaking out though! lol...I wasn't much better, it was awful! Not only that, but after we finally got rid of it (so much combing, ugh!) a few weeks later they caught it again! I did so much laundry and RID applications...I'm tired just remembering! I had to keep checking David's (less than an inch long) hair. hahahaha

David had found a new music group online, you may have heard of them...The Civil Wars. But this was right before they became famous. He really liked their music and found out they were going to be in concert in Boston in a couple weeks. We roped in a couple of our best friends to go with us, sans kids! It was amazing! We had the best BBQ we've had in years (in Boston no less! That ain't right!) and then the concert. It was in a small venue, at Berkeley I think...they are so wonderful live!
  • Can't wait to go see The Civil Wars tonight in Boston with our friends! Should be awesome!!!

Then we went to Mike's Pastry and got some lobster tails...the best pastry confection ever! and pistachio macaroons, which are pretty amazing too! Seriously, if you're ever in Boston, go to Mike's Pastry!!!

The next week, David was due for his first MRI after starting treatment.
  • so, need all you prayer warriors working overtime this week...David's next appt is this Wed, and it's a pretty important one. He's getting his first MRI since starting chemo, and it will determine whether or not he will continue with the trial...basically we need to see a reduction...for more than one reason! Please keep us in major prayer! Thanks!

    • I am having my first MRI since starting chemo tomorrow. The doctors correlating some chromosomes indicate that it should be a positive day tomorrow but regardless I am sure it will be stressful. But I will take prayers over some correlation any day. Please pray for me and my family. Thanks.
Needless to say, we were pretty nervous we got the day wrong, apparently, lol! We actually drove almost all the way to the doctor's office, we were in the Bronx when we found out it was the wrong day...oops! 
One of the nice things about going to MSKCC in NYC is that we don't have to wait for scan results. By the time we're done with the MRI, walk the couple blocks to the doctor's building, get blood work, finally get called to the room, the doctor has had a chance to view the results. Dr Lassman told us that there had been no changes, everything was the same. While it wasn't smaller, it was still good news. At least he seemed to think it was good news, so of course, we thought we'd go with that too. :) I know we were disappointed that it hadn't shrunk at all...but WAY better than getting any bigger, that's for sure!

Buddy had his first birthday! In the meantime, Red Three started having problems. She noticed blood in her stool...she would call me everytime she saw kept getting more common and more of it. I took her to her pediatrician, who referred me to a pediatric gastro doctor...she recommended Miralax, as constipation was the most common cause of stomach/bowel issues in children. If it didn't get better, than other options would be explored. She was on it for about a month, but kept having blood. 
  • so...since the Miralax didn't help, Ranae is scheduled for an endoscopy/colonoscopy to check for polyps in a few weeks. Poor baby :(
Of course, this scared me half to death! I was so worried it would be something serious. Then, we wound up having to postpone her procedure until May. She was so little then, only 4. She didn't understand everything that was going on...luckily it would be at the children's hospital and she would be under anesthesia. It was hard having to wait a couple more months though.

We wound up having to go to NYC on our anniversary...:(
  • soooo, our anniversary is this coming weekend and David is gonna take me to NYC...for a dr's appt! Yay! lol, hopefully I can at least get a good dinner out of it ;)
We didn't have time to eat a nice meal...oh well, at least he'd gotten me flowers! lol...that's a big deal!

David's chemo was going pretty uneventfully...he felt terrible for those few days, more tired than normal, but still working and overall healthy. We were so grateful!  April wound up being pretty uneventful...praise the would turn out to be the lull before more storms!